The Lupo Family's NORD 7,000 Mile Rare Movement

In honor of all those with rare disease including our baby girl, Antonia Lucia Lupo (Toni Lu), our family is joining NORD’s Rare Movement Campaign to raise awareness for rare diseases. Antonia has a rare genetic disorder called, Feingold Syndrome — a partial deletion of chromosome 2. With limited resources, literature and zero experts with experience, we, like many other families, are the strongest advocates for Antonia.

Together, participants aim to move a total of 7,000 miles of donor-supported movement by Rare Disease Day on February 28th. There are 7,000 known rare diseases, 95% of them have no treatment. Help NORD continue to support the 30 million Americans affected by rare diseases through patient assistance and support programs, research grants, advocacy and educational initiatives.

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